Sunday, August 8, 2010

Your Own Private Hiroshima

Sixty-five years ago this weekend, atomic bombs were dropped on the Japanese cities of Hiroshima and Nagasaki. At 8:16 AM on August 6, 1945, a bomb nicknamed "Little Boy" exploded over Hiroshima, leading to the eventual death of 120,000 human beings. Three days later, a bomb called "Fat Man" wreaked similar havoc upon Nagasaki. Though the destructive effects of the atomic bombs were limited to the confines of those two cities, they ushered mankind into a frightening new age, and for the residents of planet Earth, things would never be the same again.

Those of us who have received a diagnosis of Multiple Sclerosis, or any other potentially devastating illness, have suffered through our own very personal versions of Hiroshima. Not to minimize the horrific effects of the atom bomb, which literally vaporized tens of thousands of human beings and created never before imagined levels of destruction on the ground, being given a serious diagnosis has an A-bomb effect on the life and emotions the patient hearing the news. There is the blast-like shock of the sudden confirmation that something has gone terribly wrong with your body, the firestorm of searing fear about what an abruptly uncertain future might hold, and the unknown implications of the long-term effects of the illness, much like the silent but lethal radiation that plagued the survivors of the initial atomic attacks.

Similar to the residents of Hiroshima, who lived in a city that had somehow been spared the horrors of a war that had thus far kept its distance but of which they were nevertheless acutely aware (the city had been left untouched by the Allies so that a pristine target would be available for the first A-bomb), many MS patients suspect that their bodies are betraying them long before being given an actual diagnosis. Most MS patients, myself included, experience strange physical symptoms for years before the disease finally outs itself enough to be picked up by medical diagnostics.

At 8:15 AM on that long-ago sunny August morning, the citizens of Hiroshima were well into their daily routine, leaving for work, preparing for school, finishing breakfast, embarking on another day. The war had ravaged nearby cities, and had caused them privation and worry, but had no tangible physical effects on their own city. Sixty seconds later, Hiroshima was a smoldering ruin. In the days and weeks and years before their eventual diagnosis, MS patients too go about their daily business, nurturing relationships, starting families, building careers, taking their futures almost for granted, secure in the illusion of the stability of life. Once the verdict of MS has been returned, though, that illusion is blasted to pieces, the tenuous underpinnings of life suddenly revealed by the explosive light of illness.

In the months and years that follow, the destruction wrought by the disease differs from patient to patient. Some fortunate folks can go years, and even decades, with their disease largely undercover, perhaps only rarely punctuated by periods of acute illness. Others are not so lucky, their malady an aggressive and hungry beast, quickly devouring physical and mental abilities, and with them relationships and careers, hopes and dreams and expectations of what was supposed to be.

Like the surviving victims of the atom bomb, a transformation occurs among those given a bitter diagnosis, not only to mental and physical capacities, but to the very perception of reality itself. The past is severed from the present, a museum piece to be looked back on sometimes fondly, sometimes with regret, but always as an object that stands alone, as if from another life. The future, well, the future is a fragile thing, a delicate vessel of spun glass, filled with a dash of hope and an abundance of fear, so easily broken that one often averts their eyes for fear that too long a gaze might shatter it.

Best to concentrate on today, and like the survivors of a smashed city, do the very best that can be done with what remains, and not linger over all that has been lost. With everything that it takes away, the diagnosis of a serious illness bestows upon those given it the certainty of the incredible preciousness of time, the knowledge that this finite gift, which grows ever scarcer with each passing second, should not be wasted but savored, despite whatever hardships must be overcome.

"Seize the day" may be a tired platitude, but for those with progressive illness, the day should indeed be embraced, and the time held within used with purpose, thought, and even joy. Depending on one's changing mental and physical condition, the day may best be spent at work, play, or rest, but should be mindfully and willfully devoted to its greatest use. A glance back at the past will undoubtedly reveal much wasted time, and that fact should inform a present in which every effort is made to eliminate such waste. We will never again have today, and imbued with the knowledge of the dearness of time, we must try our best to enjoy each new dawn for what it most definitely is, a celestial bequest soon to be withdrawn and replaced by tomorrow.

As patients, we can draw hope and inspiration from the ultimate fates of Hiroshima and Nagasaki, as each city has risen anew, its citizens rebuilding streets, structures, and lives. Today, both cities are bustling metropolises, and the two nations whose struggle to the death resulted in the cities’ absolute destruction are now the best of allies, the once bitter enemies now friends and partners in a world so different from the days of their enmity.

MS patients, too, are watching a quickly transforming landscape, one finally showing glimmers of hope in the form of stem cell therapies along with promising new research in neuroregenerative and neuroprotective compounds and strategies. Finally, the clouds appear to be parting, and even if some of the roads now being researched turn out to be less fruitful than anticipated, the very act of traveling down them will open up new vistas for investigation, new avenues for discoveries perhaps not yet dreamed of but with profound implications.

We've entered an age of patient advocacy unlike any that has been seen before, and those to whom fate has in the past been dictated now have a voice to shout back with, and an understanding that the status quo is simply unacceptable. Without hysterics, but in a steady and rising crescendo, we must insist that new ideas be taken seriously, and demand that the vested interests of those who have profited from our collective misery not hold sway any longer. A revolution is slowly building, and with the help of dedicated physicians and researchers, we can and must become the driving force behind new ideas and new efforts that will transform the smoldering wreckage of what was into a gleaming future filled with hope and renewal. As Hiroshima and Nagasaki stand tall today, so to, both figuratively and literally, will the MS patients of today and tomorrow.

Marc,The comparison to those cities decimated in Japan long ago is appropriate, in one additional way-the U.S. dropped leaflets across each city, warning them of what was to come if their government did not surrender. Most if not all of the citizens of those cities did not believe the warning.How many of us have been forewarned by strange symptoms, yet did not put two and two together? Those patients are shocked by the diagnosis.Then there are those of us who are indeed putting the puzzle pieces together, only to have the medical establishment in denial...to us, it is the doctors who are shocked when they eventually diagnose us with MS...we patients are ultimately relieved that our suspicions are confirmed, although not happy about it by any means.And unlike those who dwelt in that horrible aftermath in those two cities after we decimated them, some of us, you amongst them, do not have the opportunity to put your lives back together again, due to the impact of your disease.But, your message about living in the present and not looking back to what has been lost is the most important of your thread. We all need to understand that this moment, this breath, is all we have...it's kind of zen, isn't it? To truly understand that the present moment is the ultimate gift, and one that we should be ultimately grateful for, no matter sick or well.Thank you for reminding all of us of this most important fact...

Your words are a paintbrush for our mind and soul. There are no simple images..but hope keeps MS people alive..now a minimal physical intervention vs corporate drug medications may allow the body to heal better. My twin brothers are off to Mexico (Los Cabos) this week to help resolve their personal Hiroshima's. Keep sharing your unique images, inspirations and hopes.

How do you do it? You write so well - it's amazing. Thanks and congratulations on the inclusion in the article "Safe Travels through the Online World" the Fall 2010 Momentum magazine. "Today" show, here you come!

You missed your calling...you should be an author, editor, or somthing... I would like to hear your thoughts about MS and Lyme disease... I had one minor "spell" and ended up at the Nero office. i have 9 brain lesions, but all other MS indicators were normal. Nero said CIS with a 80% chance it will become MS at some point. I read about Lyme being mis diagnosed as MS and have been exposed to over 100 ticks over the last 10 years so i went to a lyme Dr. that sent my blood to his special lab (my lyme tests locally were all negitive) and he said he is 100% sure i have lyme. what are your thoughts about this big controversy? Lyme and MS

Thanks everyone, for the kind words about my writing and about this post in particular. I have a confession to make: it's not really me that's doing the writing. I maintain a large room filled with 25 chimpanzees each sitting at a computer with Microsoft Word open on it. I periodically check to see if the monkeys have typed anything lucid, and occasionally I get lucky. I'll have to give the chimp who managed to bang out this post a couple of extra bananas...

Debbie-thanks for your thoughtful contribution regarding the similarities between the A-bomb and an MS diagnosis. As for some of us not having the opportunity to put our lives back together again, I agree with you with the simple caveat of "yet". I'm not prone to pie in the sky optimism, but I am encouraged by some of the recent advances made in MS research. The game isn't over yet, and though we might never be what we once were, we may be able to be better than we are today...

AnneMarie-best of luck to your two brothers, please keep us posted on how they do...

MPascale-I'm so sorry to hear of your double tragedies. I could try to offer some words of comfort, but I fear they may ring hollow. Having a loved one leave you when you're most at need is indeed a terrible thing. You're still here, though. You survived. Concentrate on today, on this moment, and try not to let the pain inflicted in the past continue to injure your present. Remember, living well is the best revenge...

I personally do believe that many cases of MS are actually misdiagnosed Lyme disease. I visited several Lyme literate doctors, but testing revealed that I don't have Lyme disease. I'd advise getting a second opinion, but I do know that Lyme disease can be a great mimic of MS.

I don't have words to describe this post. My Hiroshima was when my child got MS at age 11, without any advance warnings at all. That was over three years ago. You have perfectly captured what both of us feel about the past-"The past is severed from the present, a museum piece to be looked back on sometimes fondly, sometimes with regret, but always as an object that stands alone, as if from another life."

Thanx for ur attention, don't worry too much, one year and a half later, I'm doing pretty well again, my new lover is ten times more interesting than my ex and ibecame very much involved in fighting the desease. With a few friends, we created a forum http://www.forseps.org and it is very alive (all in French, very sorry !) and I went through the "Liberation procedure" in Bulgaria (not much ameliorations) I now await for Campath/Alemtuzumab. I think it is maybe already available in the US, go for it. http://www.campath.com/

@ Alicia: I had a similar personal Hiroshima, only my child was 17. I agree with you that Marc's analogy to the "museum piece" is very apt. Powerful post, Marc! For sure give that chimp the bananas!(prairiegirl)

Marc,Your ability to concentrate on today without looking back over your shoulder is astounding. You continue to amaze me with your encouragement and profound zest for life and what the future holds without focusing on yesterdays pitfalls. Incredible...greek

My personal hiroshima is still happening, but know this- the more explosions, the more determination I have that it or no one else will take me down Call me egotistacle or a dreamer, but it works for me. I was here long before this hell began and I will be here long after it's gone Watch me WALK AWAY!! AS GOD IS MY WITNESS

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...